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Monday, April 1, 2013

Oh my GOD it's another post about Autism Awareness Month. I know, I KNOW... these are so annoying, and they're EVERYWHERE. Okay, just bear with me.

First of all, a disclaimer: This post is not meant to be a self-righteous lecture about how you're wrong for making the choices you make, it's just my opinion on the subject. If you've chosen to go blue this year, I fully support your choices. I won't fault or shame anybody for not agreeing with me, because I think that makes things even worse. Having a different opinion doesn't mean I'm right and you're wrong; it just means that our opinions are different. When having a discussion about these issues, I think it's important to acknowledge that this can be some really hard stuff to talk about. We feel passionately about these issues, but in the end we all make the choices we think are best for our families and ourselves. Please try to remember that as you traverse the internets this month.

So, anyway: my point.... I will not be "lighting it up blue" this year, just like I haven't in previous years. Last year I think I just completely ignored it. The year before I said something sarcastic. (Right??) I figured this year I would tell you why.

First of all, I don't think that one day or one month of having blue lights on at your house does much good in the long run. Sure, you can change your Facebook picture to a lightbulb, and then all of your Facebook friends will know that you "support autism awareness" for that day, but what good does that actually do? What's important, in my opinion, is how you live your life the rest of the time. If you read this blog, follow me on twitter, are friends with me on Facebook, or know me in real life, I'm pretty certain that you're already pretty aware of autism. I talk about it a lot on the internet. I advocate for my son and the other kids in our school district every day of the year. That is the extent of my reach, however, and changing my avatar or my porch lightbulb isn't going to make somebody aware who wasn't already aware. Plus Facebook memes make me uncomfortable. I don't really know why. At least the ones that aren't sarcastic.

But the real issue I have this year is that Blue is not an inclusive awareness campaign. Blue is for the parents of autistic children. Blue is about the autistic kids and it ignores the voice of the autistic adult. If you're going to have a true awareness campaign, you need to include all people impacted by autism, and that ranges from the nonverbal child with self injurious behaviors all the way up to the articulate adult who writes books and gives lectures. A true awareness campaign needs to include everybody, and in my opinion, Blue does not.

In addition, Blue brings with it a sense of urgency: "Our 1 in 88 can't wait!" Blue uses words like "suffers from" and "afflicted with." Blue implies that autism is a beast that needs to be fought. One of my friends tells me that whenever she hears about Blue she pictures a giant puzzle piece monster trampling towns and villages and bringing fear and panic to its citizens. (I made her that picture you see up there). Yes, it's true that for some people autism actually is a monster that came into their home and destroyed it, but for most autistic adults, that is so far off from how they feel. Autism is not something that "happened" to them, it's who they are; you can't separate a person from who they are, it just doesn't make sense. A campaign to separate you from yourself in the name of awareness? I can hear the buzzing from the cognitive dissonance all the way over here.

Bottom line, if your goal is to bring awareness to autism, all of this needs to be talked about. The issues that face parents of autistic kids are different from the issues that autistic adults face, but you can't just pick one over the other and ignore the rest. It's all autism, no matter who we're talking about, and an awareness campaign that excludes part of its own population completely misses the mark. This is what I think Blue does: I think it misses the mark. And that's why Blue is not for me.

Who the hell do I think I am?

Snarky, profane Mama to 2 boys: Child 1 is autistic and Child 2 OMGISN'T. I write about... stuff. Sometimes. Other times I write about other stuff. A lot of the time I don't write anything at all. Sometimes I draw really bad and stupid pictures. I'm not just saying that, I mean, they are just awful.